The mother of a 20 year-old Worcestershire woman is desperately calling for renewed support from friends to total strangers to help crowdfund specialist neuro and spinal surgery in Barcelona to save her daughter’s life.
Antonia Payne-Cheney, ‘Tonia’, from Eckington, near Pershore, has an acute form of Ehlers-Danlos Syndrome, a rare connective tissue disorder, along with complex secondary complaints, and these have caused her brain stem to be compressed and to have further gastro-intestinal failure. Fed through a tube and bedridden, Tonia has remained positive throughout her illness, since she was diagnosed at the age of just 14. Tonia’s plight was the focus earlier this year of the programme ‘DIY SOS’ which saw the BBC team transform Tonia’s home and enable her to leave hospital after three and a half years of hospital-stay.
So critical is Tonia’s condition, that, provided Victoria can raise a further £21,000 this week, she will drive her daughter in a hired ambulance with a paramedic and intensive care nurse to support her, in order to get Tonia to the hospital to undergo surgery. To date £71,000 has been raised through a combination of online sponsorship, corporate
support, an online raffle and local fundraising events. After the surgery a further £40,000 will be needed for rehabiliation. It is a mammoth task but Victoria is determined that she will succeed, saying: “We are currently running an amazing online auction of experiences with sealed bids on items such as luxury cruise trips, and short break accommodation stays which is being promoted through Facebook at Tonia’s Journey or on Twitter at @ToniasJourney_ which we hope will generate good income, but we also welcome direct support through sponsorship on the JustGiving page” Victoria said: “It is imperative that her surgery is done urgently in June as the Barcelona hospital team are not there in August and so will not operate in July as they must oversee her complete recovery and rehabilitation. I have no choice – her survival depends on this and I am having to call in all the favours. It is something no mother wishes to do for her own daughter”. May is also Ehlers-Danlos Syndrome Awareness Month and Tonia’s own situation has served to help raise awareness of the condition.
The JustGiving page link is https://www.justgiving.com/campaigns/charity/just4children/toniasjourneyforsurvival Donations may also be texted : TEXT : EHLE82£1 or EHLE82£5 or EHLE82£10 to 70070